The coronavirus crisis poses additional challenges for individuals and families living with autism. This interactive online event provided a platform for parents and caregivers to share stories, concerns, advice, and questions. View the recording here.
Our guest commentators Lee Wachtel, MD, Medical Director, Neurobehavioral Unit, Kennedy Krieger Institute, and Alycia Halladay, PhD, Chief Science Officer, Autism Science Foundation, joined NCSA President Jill Escher and Vice President Feda Almaliti in leading the discussion. Please note that this event is intended for information and support purposes only, with no medical advice provided.
Link to the video recording here
View the recording here.
NCSA will host additional Share & Care events soon.
Links to resources mentioned during webinar:
Resources during Coronavirus for special needs: https://www.facebook.com/groups/3074955429234543/
PrAACtical Resources: Dealing with the Covid-19 Pandemic. Free downloadable resources for kids and teens who are nonverbal or minimally verbal: http://bit.ly/3902uGk
Unemployment claims information (to come)
Info on CMS Emergency Guidance
Crib notes, courtesy of Jennifer Meis Abbanat:
Topic: Quarantining or self isolation, shelter in place with kids who have severe behavioral responses:
Wachtel: Do what you need to do to keep you and your family safe! Lower expectations to keep sanity and allow flexibility. For example, if child will be calm with more game time, okay- be flexible! Having a disability or a child with a disability puts you and your family in a different category due to the day to day challenges of this emergency crisis.
Topic: What about people who have children that receive ABA?
Suggestions: Telehealth may be an option, not just for physicians, but now for mental health professions, and other essential workers including Behaviorist and therapists.
Topic: How to protect kids from getting sick who are not cooperative with washing hands, may lick things, touch many surfaces repetively?
Halladay: Things that can help: (in general)
Take shoes off in house
Take coat off
Change clothes when you come into the home from being in public (clothes can harbor virus)
Wash hands
Help your children wash hands and if necessary use the High Quality Reinforcers!!! This is the time to utilize them.
Soap and water is best. Hand sanitizers if available when no access to soap and water.
Also can make a sanitizer using 10parts water/1 part bleach- can use on hands, surfaces= allow to dry naturally instead of wiping dry.
Take advantage of home deliveries when possible.
When supplies are hard to get in grocery stores, call the store and let them know you have a child with special needs and cannot go and stand in line for periods of time, etc and request to set aside x, y or z items for either delivery or set a time to pick up item. Stores are being flexible and accommodating
Topic: Medications that can help reduce anxiety, outbursts, or aggressive episodes.
Wachtel: Our kids have sensitive systems and don’t always respond as expected to medications, so be cautious “trying new” meds during this time of instability.
Things to consider: If child is currently on medication, is there room to go up on the medication to help? Optimize the doses, ie tap into sedating qualities during this time if necessary to help bring things down a few notches ( for example if they were going to the dentist, flying across country, etc you would maybe give them a more sedating dose of a medication they are on- It is okay to use that now as well!
Parent Guilt, maybe you can’t always follow through with something. It is Okay!! Give yourself permission to be even more flexible.
Escher: Helpful resource Whole Plant Access for Autism Facebook Group wpa4a.org. Useful if considering or need additional help when using medical cannabis.
[Side Note from JMA: My own personal experience with this is I have had to now dose my son 3 x a week compared to his usual 1x a week dosing that has maintained his stability in all activities of daily living for the last 2 ½ years. This is a trying time even for kids who “were doing well”. Cannabis is individual with how dosing works. But with cannabis I have flexibility to give more or less depending on what behaviors, anxiety, agitation I see. It has helped calm his entire being down.]
Halladay and Wachtel: What to do when child is having “an out of control episode” ? Several medications can be effective to help. Benzodiazapenes, ie Xanax can work effectively and fairly rapidly, onset of action about 30 minutes. Suggestion: Have something like that on hand for when it's necessary. Have doc prescribe a med proactively for this reason. The stress and anxiety is very real, the changes in routine and structure can increase it. These are unusual times.
Topic: On top of many of our kids who struggle already with sleep issues, and now adding the extra stresses and anxiety during this pandemic, is real. Escher: Son uses trazadone and melatonin.
Wachtel: Again, optimize timing of meds they may already be on, that may already cause some drowsiness. Consider all options during this crisis, ie clonodine, neurontin.
Topic: Should you cancel in home ABA session?
Halladay: Call provider- ask risk assessing questions, ie has person traveled, have a known exposure, having symptoms of any kind. Iit is a case by case basis and if you decide to continue be sure to have provider take shoes and coat off, immediately wash hands, wipe down all surfaces and tools, equipment, devices, etc used. Continuing ABA can provide the routine and structure for the child. But either way in the grand scheme of what is currently happening, it is not a big deal, it is really an individual decision.
Topic: Simple Strategies when routines are disrupted
Use online resources, structure day involving child ie, chores, laundry, cooking, etc, work with child to create new routine. Note: If child wants more screen time, it is fine. These are unusual times, give YOURSELF PERMISSION if it helps the child, it will help you!
When in a shelter in place situation, you are still allowed to take walks, get outside yet still avoiding others with social distancing. Scooter, bicycling, hikes. Everyone is doing their best, despite a lot of confusion.
Public playgrounds- not a good idea. Virus can survive on surfaces of play equipment.
Suggestion: Create a calm down space in your home
my suggestions: Create a fort. (Use a sheet over a small desk and allow child to put what they like into fort)
-Create a positive sensory experience for child, ie put flour in a balloon, a great squishy fidget item. Or beans or rice.
Use what sensory items or environments help calm your child, esp during this time.
Topic: Water Aversions for Kids, what to do!
Use hand sanitizer, use Clorox wipes, or can put soap on a damp washcloth and wipe child’s hands thoroughly. This is a time to use high reinforcers (ie if child wants a bowl of chips, great use this reinforcer)
Allow community to help. People, neighbors want to help and share resources
Topic: Parents who feel guilty for not doing homework, school work, etc
****Do NOT FEEL GUILTY!***** This is an emergency crisis, it is about getting through the day! Survival!!! It is okay if you need to indulge your kiddos as necessary to get through this time!! Ie more screen time, more snacks, more of this or that to keep things calm With No guilt! Safety and Sanity FIRST
Topic: Finances during this challenging time
Links to insurance, disability, FMLA, Medicare/Medicaid information will be posted
Some options:
1. Work remotely, even if you need to adjust things to make it work, be flexible, modify if possible
2. Family Medical Leave
3. Unemployment (and due to pandemic some states have new relaxed requirements)
Many schools are offering free/reduced lunches ie grab and go boxes. Ask local school if available.
Question: A special education teacher who teaches age 3-5 asks how to do distance teaching for this age?
Suggestions: Do anything that will keep the kids occupied- art, music, crafts, games. Learning can look different- that is fine. Even if a kid wants to watch Frozen 11 all day or 4x in a row, let them if it creates a calm environment for everyone.
Escher: Stay HOME! The less we travel, the more we individually hunker down, will help flatten the curve of the outbreak. Amazon has changed some policies during this time.
Suggestion for deliveries: unpack boxes outside, wipe down what you are bringing into the home, use all precautions when receiving a delivery , or signing for a delivery.
Topic: IEP
Almaliti- If school suspends school activities for regular education students, they do not need to provide compensatory education services for those in special ed. Only if they provide coursework or activities or anything for general ed students, then they must provide for special education students.
Everyone needs to be patient with schools, providers, etc
Take Away: Do what you need to do to get through the day.
Recognize in an ideal world we would want a, b, or c- but it is not right now so
Be Kind to Yourself!